Multiple Sclerosis: New diagnosis

So I have had this balance and vertigo and dizziness issues since November 2017. And I have done the ENT thing and I have seen a vestibular clinic and I did an MRI. And the MRI… well it didn’t look so pretty, man. I have migraine lesions due to chronic migraine with aura. But I had New lesions in areas known for demyelination. So off to this neurologist, I go to say yay or nay on Multiple Sclerosis (MS). Which runs in my family.

He had the top neurologist look at my MRI and that neurologist concluded it was MS. I present with MS symptoms… these balance issues and cognitive issues and so forth. But there is a lot of overlap between fibromyalgia and MS so hard to say which is causing which. He did a physical exam and I did very well. He believes I have early remitting MS but wants to do a contrast MRI before treatment to see if any lesions are lighting up (flaring) and whether I have any on my spine. And then we will be 1000% positive and we can then look at specific treatments to help with halting the progression and helping with symptoms. He also wants me to see their MS cognitive expert to help with my cognitive issues.

multiple sclerosis

What I think

So I think it is very good that they caught it this soon that I did so well on the physical and that they can slow the progression at this stage. That is very good news. I asked about my current symptoms and he said they don’t go away unfortunately but they shouldn’t Get Worse and they can do medications to treat symptoms as they crop up as well. So positive in the sense that there are a lot of very good MS medications out there. And usually when I am diagnosed with something it is all ‘we have nothing we can do, sucks to be you’. So this is different. Lots of treatment. Lots of support. A team of people to help me. I mean, if you’re going to have something then it is better to have something with a lot of treatment options and a crapton of research going on.

My feelings

I feel out of sorts. I mean, I sort of expected it from the MRI report being so ugly. And my family history being what it is. But sort of feel emotionally chaotic about it. I do Not Want Another Shitty Diagnosis, thanks. But that is what you get whether you like it or not sometimes. It is what it is. And, yeah, I can feel sad about it. Rant and rave a bit. But I will have to face it head-on and cope with it. I feel on the cusp of tears but I don’t want to cry about this. I have dealt with health issues for a long time. I can deal with this. Hell, I can deal with anything having dealt with what I have. I don’t Want to but I certainly will. And I will rock it because my coping skills have been refined by every level of hell we go through while we struggle to cope. But it is a bump in the road of coping. I will feel a slump. It is normal. But I will adjust. Dealing with the vertigo, the constant relentless dizziness, the cognitive issues, the fatigue, the balance issues… and knowing that is just going to stick around until I get out of this flare… and then come back… does not please me. My functionality sucks and I do not like that at all. I thought, maybe, with proper medication it would improve and to know it will not is a bit of a hit.

My friend said to me when she and my friends took me out for a nice distraction ‘I wasn’t sure if you would be sad or relieved’. And I said ‘both’. Because it sucks, a lot, but yes, I have answers and treatment potential and I know the cause of all these symptoms. So both. I do feel very out of sorts. Mopey. Real mopey. But I do understand that at least there is treatment and support. So I know I will kick myself in the butt soon and just deal with it. My friends did take me out to karaoke and I did chat with them, one does have MS, and it did help… and I EVEN SANG A SONG. I sang The Logical Song by Supertramp. And apparently, I didn’t suck. I sang it with my friend because of course I am introverted and terrified of being in front of people. Anyway, it was a damn good distraction and prevented me from just moping at home all night overthinking myself into a funk. Today I feel a bit better. Still out of sorts but a bit better.

And who the hell knows? Maybe he will do that contrast MRI and say, hey, not MS after all… your brain is just messed up. He said people with MS in their family can sometimes mimic MS in the brain… which is weird. One never knows. Because MS is hard to diagnose as well. And migraine lesions complicate things a lot. But yeah, their head honcho says it is and yeah he says it is he just wants to look at what is going on specifically before choosing medications. So I have to go on those facts. And deal with those facts as they are at this time. I told him I wanted to be mentally prepared and needed to know and he said it was but that he wanted to do the contrast before treatment. So yeah it is. And that is that.

Multiple Sclerosis- the deal

Is a frustrating disease for sure since no two people present the same way. I can’t really say ‘what can I expect?’ because who even knows?

Canada has one of the highest rates of multiple sclerosis (MS) in the world, with an estimated 1 in every 385 Canadians living with the disease. While it is most often diagnosed in young adults aged 20 to 49, younger children and older adults are also diagnosed with the disease. MS Society

It is speculated the fact in Canada we get it so much more often because of the lack of vitamin D we get- being where we are and all.

MS is considered an autoimmune disease of the central nervous system.

The disease attacks myelin, the protective covering of the nerves, causing inflammation and often damaging the myelin. Myelin is necessary for the transmission of nerve impulses through nerve fibres. If damage to myelin is slight, nerve impulses travel with minor interruptions; however, if damage is substantial and if scar tissue replaces the myelin, nerve impulses may be completely disrupted, and the nerve fibres themselves can be damaged. MS Society

There are three types of MS

  • Relapse remitting MS (RRMS)- Basically periods of relapses and remissions. (This would be me in this category)
  • Progressive MS (PMS)- A certain amount of people with RRMS will get into PMS where the relapsing/ remissions will end up being less remission and more progression of symptoms.
  • Progressive Relapsing MS – Experience progressively worsening symptoms from the beginning. But also with relapses.

Some MS basics

See more

Brain lesions and possible MS
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18 comments

  1. Information, whether good or bad news, is always more desirable than not knowing (in my opinion). That said, I am sorry to hear about this diagnosis. I was diagnosed w/ MS in 2012, but had symptoms since at least 1997 (optic neuritis) and possibly since I was 10 years old (severe migraine with aura that came on at least a few times per month … they seem more like strokes than migraines, with one-sided numbness, inability to remember the most basic of things like my own name, etc).

    Because of my history of migraine, I went without a diagnosis for nearly 15 years: every neurologist who would look at my MRIs would immediately say that the spots were caused by migraine and not MS. One of the things that my most recent neurologist noticed, though, was that in addition to the spots being in regions of the brain typical for demyelination, at least one of the spots had a “Dawson’s finger” shape, which is (I believe) exclusively a feature of MS.

    My spots never enhance with contrast on the MRI, and my spinal fluid is negative for MS markers. Although I was put on Copaxone when I first was diagnosed, my docs now believe that I have a progressive form of MS (e.g, no inflammatory activity is present). My primary symptoms are fatigue and cognitive challenges (word-finding), but I also have right-sided weakness when I get overheated, and I am now starting to experience some balance issues while walking.

    I would suggest that you speak to your neurologist about getting a spinal tap, if you have not yet had one (gives another data point, which could help verify the MS diagnosis). Also …. and this is really key … talk to your doc about ordering a NeuroQuant analysis with your next MRI. This analysis performs an automated measure of the volumes of various components of your brain, then compares those volumetric measurements against what is “normal” for your age/gender, to flag possible brain atrophy. This analysis is what ended up explaining my cognitive issues, and what really confirmed the “progressive” nature of my MS, as none of the other other MS “tests” ever really indicated MS (because those tests … the contrast used in the MRI, the spinal tap, the occurrence of repeated relapses … are all caused by inflammation, which is no longer in my central nervous system). The NeuroQuant analysis indicated severe brain atrophy in my case, something that would have never been realized by just a manual review of the MRI images. There are no treatments for “non-active” progressive MS, but at least I now know what is wrong with me and can plan accordingly. Given our similar migraine backgrounds, I really do encourage you to bring up NeuroQuant and a spinal tap with your doc.

    Warm wishes to you!

    Liked by 2 people

    1. Ah I too have migraine lesions and have had them since 2009. I do believe it confuses the issue. I suspect after the contrast I will get the spinal tap as well. I will mention this other thing to him too

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  2. Your post really summed it all up perfectly, but I just imagine you’re feeling a mix of disappointment over this new incurable diagnosis, and relief at the validation of a diagnosis that’s taken seriously by medical professionals and the general public. I know, and you know, that Fibromyalgia is very real, but let’s face it, a lot of people (and even some doctors and nurses) treat it as a joke diagnosis.

    I was personally very sensitive about my diagnoses of ME/CFS and Fibromyalgia, but much more willing to tell people about my POTS or Migraine diagnoses. Recently my neurologist diagnosed me with Autoimmune Autonomic Neuropathy, which as I understand it is basically just a fancy way of saying my POTS is caused by autoimmunity, but for some reason, having a cause, and a list of autoantibodies that are pathologically high and don’t belong in my bloodstream, is validating. Not that it changes a darn thing, I know exactly what my symptoms were before, but somehow being able to point to a less stigmatizing diagnosis is a relief. I get the impression it’s the same for you, yes?

    Obviously no diagnosis should be “stigmatizing,” but apparently chronic illness, like most everything else, gets turned into a competition by some people. I wouldn’t wish a chronic illness on you or anyone else, and I’m sorry about this news, even if it comes with mixed feelings and some degree of validation. You are right though that at least MS is something taken seriously by the medical profession, and there are a lot of treatment options out there. I personally am suspicious that a lot of these similar (symptomatically anyway) chronic illnesses, especially of the CNS, are in fact autoimmune, so maybe an effective MS treatment will help with your co-morbids. I hope so. But I also share your thoughts on the right level of hope to maintain! I’ve likewise fallen into the trap of placing too much hope in one person or treatment, only to have that hope dashed.

    Hang in there, please, ability or inability to work has zero impact on a person’s value as a human being. And though I believe it’s how we touch the lives of others, and not what we produce, that gives meaning to our life, you’ve generated a lot of kick ass novels and really contributed to creative spaces! Please take care of you, too, and don’t feel guilty about it in the least.

    Liked by 1 person

    1. Yeah it is one of those diseases that gets a lot of research, lot of pr, lot of treatments… vs fm that is so ignored. So at the very least there is a boatload of support and treatment. Not what you get with fm for sure. But it is difficult to deal with at the same time. So I am very mixed about it just having to deal with yet another thing and a crappy one at that.

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    1. It is pretty confusing really. I don’t have enough information I think. I know so much more about the conditions I have and knowledge is power. Anyway, I need that contrast MRI to prove anything even though I know it looks bad as is. And that apparently will take time because they are backlogged.

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      1. It has been over a year but my main symptom is vertigo and balance issues… so I had to do a lot of ENT stuff first before my MRI. That slowed stuff down a lot. Yeah, MS is the worst it could be for sure! And I have a Lot of family with MS so there is a lot of support there

        Liked by 1 person

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